Abstract
to describe home care practices performed by family members for maintaining the life of children with gastrostomy. qualitative research using the Sensitive Creative method, with the Criatividade e Sensibilidade Corpo Saber [Corpo Saber Creativity and Sensitivity] dynamics. The participation included ten family caregivers of children with gastrostomy. The outpatient clinic of a federal hospital in Rio de Janeiro was the setting. Lexical analysis was used through the IRaMuTeQ® software. Theme 1, entitled "The care for maintaining life performed by family members of children with gastrostomy at home", was analyzed, comprising three classes: "The gastrostomy tube home care routine"; "The care with the gastrostomy/stoma"; and "Food and medication home care routine of children with gastrostomy". family caregivers used strategies to maintain the device and acquired new knowledge in this field, and in nursing competence, regarding stoma care, food administration, medication, and syringes.
Highlights
In addition to the demand for technological care in gastrostomy, it was identified that some children had tracheostomy with the use of Bipap®, ventriculoperitoneal bypass valve (VPS), nephrostomy, permcath and foot orthosis
Home gastrostomy tube care is bolstered on the perspective of the nurse enhancing the family member’s ability to promote and elaborate the procedure and enable him to develop the necessary skills to perform the care and handling of the technological device(14). These care measures performed at home by family caregivers incorporate care measures to maintain life(7)
Regarding gastrostomy and ostium bathing care (Class 4), a study reveals that, during home care, the anguish and suffering referred by the respondents were associated with the fear of the probe coming out, of the child pulling out the probe, facts that can occur during the bath and, require special attention from caregivers
Summary
METHODSChildren with special health care needs (CSHCN) is an expression adopted to designate a group of children who have chronic, physical, developmental, behavioral, or emotional conditions, requiring greater use of health services and care by different professionals from the most diverse specialties, including nursing(1).These children have specific care demands, which differentiate them from other children, and are classified into six types: development, technological care, medication, modified usual care, mixed care (a combination of one or more demands, excluding technological), and clinically complex care (a combination of all demands)(1).Of the six types of care demands, children with special health care needs with gastrostomy, the focus of this study, are those who present technological care demands and, often, may present clinically complex care demands.Study developed in a large hospital in Minas Gerais on the characterization of the profile of children discharged from the neonatal unit; 138 children (12.77%) had, at the time of discharge from the Neonatal Intensive Care Unit (NICU), diagnoses with repercussions on their growth and development or demand for special care. Children with special health care needs (CSHCN) is an expression adopted to designate a group of children who have chronic, physical, developmental, behavioral, or emotional conditions, requiring greater use of health services and care by different professionals from the most diverse specialties, including nursing(1). These children have specific care demands, which differentiate them from other children, and are classified into six types: development, technological care, medication, modified usual care, mixed care (a combination of one or more demands, excluding technological), and clinically complex care (a combination of all demands)(1). A gastric route through a gastrostomy is the most common and preferred resource for long-term nutritional support because of its durability(3)
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